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A rare disease: Two local boys live with galactosemia

Posted on Monday, March 20, 2017 at 9:34 am

By Leila Beem Núñez, News Editor

Jayce Floyd was born premature and was just over a week into his stay in the neonatal intensive care unit, and something was very wrong. When fed breastmilk, he would become unresponsive. It wasn’t until a doctor who had seen it happen before realized what the problem was: Jayce suffered from a rare disease called galactosemia.

“Babies with galactosemia usually die within seven days if not detected,” said Crystal Floyd, Jayce’s mother. “And Jayce was on day 10.”

From left are Crystal Floyd, Jayce Floyd, Connor Hoyne and Tiffany Hoyne. Jayce and Connor, both 5, live with a rare disease called galactosemia. (Staff photo by Leila Beem Núñez)

The detection, Crystal said, helped another boy survive. Months later, another baby from the area, Connor Hoyne, would be diagnosed with the same disease.

“They remembered Jayce. [Connor] was on breastmilk for two days, and he started getting sick, so they took him off immediately. He was born eight weeks early, and he was already in the NICU, so they caught it really quickly,” said Tiffany Hoyne, the boy’s mother. “If they hadn’t detected it, they both could have died.”

A rare disease

Jayce and Connor, both now 5 years old, are two of four children in Coffee County who suffer from galactosemia, a rare disease that occurs in 1 in every 30,000 to 60,000 newborns. The disease is a genetic disorder in which the body does not have the enzyme that breaks down the sugars lactose and galactose. In order for a child to be born with the disease, both parents must be carriers, and there is a 25 percent chance of passing down the disease if both are.

Far from being a lactose intolerance as its name may suggest, galactosemia can cause serious, long-term complications like neurological impairments, learning delays, speech disorders, serious ovarian issues and cataracts, among other conditions. Strict diets are required in order to keep levels of the sugars down so that serious conditions can be prevented.

Crystal and Tiffany, both of Manchester, said they know this all too well. Both Jayce and Connor have undergone therapies throughout their lives, from occupational to speech. Connor only started speaking in full sentences when he turned 4 years old, Tiffany said. Both mothers learned basic sign language to communicate with their sons early on, learning signs for ‘more,’ ‘help’ and ‘hungry.’

“The effects aren’t anything immediate because it has to build up. But over time it can cause brain damage, kidney failure, liver failure, sensory issues, cataracts,” Tiffany said, adding that both boys must have their eyes checked every year for cataracts.

Day-to-day for the mothers are not typical, having to ensure that their sons only eat what they are able to. Both Connor and Jayce must be on strict diets, not able to eat anything with milk or whey. Certain vegetables are also high in galactose, and the boys cannot eat processed, mixed meats.

“No ice cream! And no chocolate! And no cheese,” Connor chimed in, as he ate chicken strips and French fries from Zaxby’s, approved by Tiffany.

Making sure Jayce and Connor get what they need outside the home is hard as well, both moms agreed, communicating with teachers and school administrators about what they need. Even cooking from home can be challenging, Crystal said.

“We have three children, and he’s the only one that has galactosemia, so with our daughter before that, my husband’s family is a big country cooking family, with butter and milk and everything,” Crystal explained. “So when Jayce came along, it was like: OK, we have to stop and alter this and make sure it works for him.”

Finding other options

But both moms have found alternatives, Crystal said. Though sometimes difficult to find certain dairy-free products that stay on shelves in stores, she has found other options from dairy-free Walmart-brand Hostess cakes to take to birthday parties to dairy-free cookies her mother found recently. To get Jayce used to drinking soymilk, his parents put Nesquick in it so he could have his “chocolate” milk.

Though difficult, Tiffany and Crystal have found support in each other, often consulting each other about food options and advice.

“I usually check the online allergy info, and a lot of times if [Tiffany] is going to a new restaurant, she’ll text me and ask, ‘Have you been here yet? Can he eat this?’” Crystal said. “It works out because between me and her, we have a good communication and support system, being so close.”

They have also found support from the community. Tiffany said it helps to live in a close-knit, small town like Manchester, where people are willing to accommodate.

“Connor gets the ice cream over at Manchester Chill, the sorbet. The owners of Chill also have a pizza place [Hot Spot Pizza], and they actually made him a pizza. I talked to them, and they let me read all the ingredients and everything, and they made a pizza just for him and brought it out to him,” Tiffany said.

Making progress

Today, both boys are in school and each is making progress. Connor is only in speech and occupational therapies now. Jayce is no longer in speech therapy and is now able to hold a pencil, thanks to a teacher who gave him a special tripod pencil grip to use when she saw it was difficult for him to keep the pencil in his hand. He can now write his name.

Both Crystal and Tiffany remain hopeful that someday a cure will be found for the disease, now participating in a study out of Emory Hospital in Atlanta that is studying the different mutations of galactosemia that lead to different delays and conditions in children who have it.

Tiffany last year hosted a fundraiser at the Ada Wright Center, for galactosemia research, and they hope to host another later this year. Tiffany also runs her own boutique out of her home called Reese’s Genes, proceeds from which she also donates.

“We hope that eventually there’s a cure. This is lifelong,” Tiffany said.